Chemotherapy is barbaric. It is counter intuitive to everything we know and expect from medicine. It makes you feel poorly before it can make you feel better. Often it doesn’t make you better. It just slowly eats away at your insides and messes with your head until your bodily functions and processes are effected. Then, in theory it starts to impact on your cancer’s ability to grow.
That’s if you’re lucky, with Triple Negative this is often a short lived effect. Sometimes it doesn’t work and the cancer just grows. After 18 weeks of four types of intravenous chemo last summer, mine grew. The main tumour was bigger than 96mm when it was removed. The last lot of 18 weeks chemo I had in spring/summer this year worked at first. My RECIST (Response Evaluation Criteria In Solid Tumors) was even described as ‘0mm, a complete response to treatment’. That was for about a month, until I felt it growing again. It was another couple of months before this showed up on a scan. My secondary tumour is now bigger than it was when I started the last clinical trial and it’s in other lymph nodes too, plus a local reoccurrence on my chest wall. You can probably tell I don’t believe chemo is that effective.
You have to be dying, to want it. Enough said.
Added to this I was always way too much of a control freak and sensible scare-dy cat to take drugs (aside from a few puffs on a spliff at Uni). Having worked for 25 years in marketing, advertising, branding and innovation consulting that’s quite an achievement and a very deliberate choice. So, it’s depressing to poison your body again and again. It is beyond comprehensibilty that the cancer continues to defy the chemo’s aggressive purpose.
It’s fair to say I’ve had a few interesting reactions to drugs in the past (pre cancer) and I’m even allergic to Red Bull. It gave me altered reality and makes me hallucinate. Even without Vodka.
So as you can imagine I’m not relishing starting my daily chemo.
I put on my big girl pants (I think I will need them!) and I tucked into my seventh type of chemo drug last night.
Two years ago I was ignorant about chemo. Chemo was chemo. It was a scary abstract concept that I’d seen depicted in films. It made you lose all your hair, vomit, your skin turned grey and it hollowed out your eyes. It looked grim. It wasn’t on my to do list. It definitely happened to other people. Not people I knew and not me.
And here we are. I am no chemo expert by any stretch and having looked into the ingredients and how they discovered some of them, you don’t always want to know. I’ve mentioned the mustard gas derived Cyclophosphamide before. That really messed with my eyes when it was surging my veins and my eyesight deteriorated. Others are platinum based, taxanes are derived from genus taxus which are yew trees, a tree we played under as children and were told in not uncertain terms not to touch the sticky yew berries (or glue berries as we called them). These are not ingredients you are salivating over putting in your body. That’s why for me intravenous is better. It’s a good way to detach.
This time around I’m on oral chemo. Who knew there was such a thing? It’s a tablet. Ten to be precise. Five in the morning and five at night. So ten times a day I am expected to knowingly swallow cytotoxic chemicals. So cytoxic (not that I think anything can be a little bit cytoxic) that I have to wear gloves to pop them out into a little sauce pot and then take them. I have to return the empty shells of the packet to the hospital, presumably to incinerate (or maybe because it’s a trial). Hopefully I won’t be an empty shell too, I’m not ready to be incinerated yet.
I thought tablets would be easier, more convenient. I’m only 10 tablets in and psychologically it’s a bit more invasive.
Give it a week and it will be my new normal. Or I’ll be distracted by the side effects.
I started writing this on Tuesday morning. A lot can change in a matter of days. Emotional roller coaster feels like a hackneyed and over-used metaphor, one that doesn’t feel adequate to describe the last 48hrs.
I want to be true to what I felt and wrote a day or so ago, so the tense might jump around in this piece – for any grammar pedants out there, you’ve had your warning.
In the run up to being on the trial I am looking for signs of hope or good luck. Originally they were sending my eligibility and radomisation request on my birthday. That seemed like a good omen. The very fact that I got the place offered to me after it had previously been allocated, that seemed pretty serendipitous too.
I’d lost the diamond out of my 40th Birthday ring that signifies 4 decades and 4 family members. It was my birthday, the stone was missing, this didn’t seem like a great sign. However, in the dark of the theatre I found the rock lying on the floor. I had found it again, almost instantly. Surely I’d get through elligibility?
I have jumped through every hoop I have been asked to, I’ve anticipated hoops and removed them before we got to them. I’ve organised my own scans with the help of proactive and kind teams in other hospitals. I have collected my own pathology reports from hospitals in person, scanned them and sent them to other hospitals. I have checked on the nurses screen that ECGs have actually been whizzed on internal systems. I have been ‘on it’ in the most full on way possible – even for me.
Yet we are still waiting… I was told I’d have the go ahead and details of which arm I’m on, on Friday… Monday at the latest… Yet it’s Tuesday and no news.
I am sitting in the clinic waiting to see an oncologist for what is supposed to be Day 0 of a new clinical trial. I’m due to start tomorrow, yet I do not know if I am eligible for this trial (I’ve checked myself, but I don’t get to decide) or which arm I will get. I feel physically sick with anxiety, hope, excitement and panic. An uneasy compound of conflicting emotions. I am emotionally and physically exhausted.
I feel like I’m at the finish line, but there is no one here. No cheer. No accolade. I am wondering if anyone knows I’ve sprinted this race?
So I am literally waiting to hear if I get immunotherapy. I’m in a windowless side area of a hospital lobby. Amidst the juxtaposition of hospital buzz and sedentary cancer patients (and their loved ones), standing and sitting in lines. All of us facing the screen waiting for our name, our fate and our next step. Slowly people are called in.
My husband and I aren’t talking. Not because we are in a grump with each other, but because there is nothing to say or do until we know. Everything else is suspended in time. As a couple with young children you long for one to one time. This is not the vintage of time or location we need right now.
We are biding our time, until it’s time.
Just over an hour after our apt we are called. Not bad.
From my research as someone at the second line treatment phase (second attempt at a drug or drug combo to control the growth and spread of a secondary cancer and/or local reoccurrence), this trial is the only way I can get immunotherapy in Europe (and possibly The World) at the moment. That is without robbing a bank, changing the genetic make up of my tumour or bribing a lab technician in a large pharma company.
I’ve been at this stage before for my first line treatment. I got the placebo.
This time It’s an open label trial so I will know at the start of the trial. This is because it’s a much earlier phase trial and I’m guessing because the control is a tablet and the arm open is an intravenous Atezolizumab and a tablet of an AKT inhibitor called Ipaterstrib. Still struggling with the pronunciation of the latter. Atezolizumab is now a word my 10 year old can pronounce. I don’t believe in dumbing things down for kids. After all, ‘immunotherapy’ isn’t much easier to say.
As yet another aside, when I first talked about immunotherapy with the kids, at the beginning of the year, they were fascinated to hear how that worked. My son, who fancies himself as a future zoologist said, “Mummy, but how did they find out that Emu’s could help people with cancer?”. Oh how I laughed.
I like the idea of emunotherapy. Frankly I’d try anything right now.
BING! I’m called in to meet another new oncologist, who works with the one I saw just under three weeks ago. To my relief, I have been accepted to the trial. Phew! It literally was the last place as it has closed globally for review. We’d secured it. However they still didn’t have the go ahead to randomise me (drug lottery). So I was on, but we still didn’t know which drugs I would get.
Adrenalin was switching on and off like a strobe light. I wasn’t sure I could take much more. I’d already experienced a kind of primeval emotional outpouring on Sunday night. A kind of release that I hadn’t really experienced since being diagnosed in May ‘18. I was a bit freaked out by my reaction, but it was probably proportional and I felt a lot calmer the next day!
After another blood test and another 2hr wait in a hospital chair – I was free to go. To go and wait somewhere else. My husband had taken the day off work, but we still didn’t know if I would get immunotherapy, I was provisionally booked for the next day.
Right now I could do nothing more but go home and wait for the drug sponsor based in a different time zone to get into work and process our randomisation request.
The way this trial works is you either get the control, or one of 8 other drug combinations. Capecitabine (a tablet form chemo) is the control, then the other 8 combos are like a cocktail menu with Atezolizumab as the gin or vodka base and the other drugs they combine with it are mixers or other little spirits to pep up the Atezo. I guess the drug companies aim is to see if they can give Atezo without chemo for it to be effective. What they are seeing right now is that the Atezo works in some PDL-1 positive patients when combined with a taxane based chemo called Abraxane. FDA have approved it in the USA for first line. I wouldn’t be eligible though. NiCE have yet to approve beyond expanded early access programme, due to cost and narrowness of the indications (conditions/disease areas it can be applied to).
OK, this post is starting to feel as drawn out as the real thing was and I’m not sure I can go over it again, so I’ll cut to the chase. The oncologist called me twice that same Tuesday evening to advise of changes to the trial structure, ratios etc. We didn’t want to wait any longer for treatment to begin again, so even at a 50/50 chance of Atezolizumab we pushed the button on the lotto machine (it is literally a computer programme).
I got the chemo.
8th October 2019 (finished on 10th October when I could bear to write about it again).
Have you ever noticed that when a news item becomes a bit more serious or drawn out it gets a logo on the BBC? The global economic downturn had one, the US Elections, the referendum etc. Brexit has had several, a made up name and it even got a dictionary entry! I’m clearly not that newsworthy, but as I am now about to enter into my 18th month of cancer treatment I thought it was time The Cancer Gap got a logo. So here it is.
The beady eyed of you will have noticed it at the top of the search bar or on social media.
I could have asked or paid one of my design colleagues or contacts to do this, but I thought I’d ask my friend who is teaching herself design. She loved working on something real. Or so she told me. She explored a few options and together we came up with this. She even dragged her IT husband into the task. This is just one of many examples I have of people in my community going above and beyond to help and to contribute somehow.
I thought I’d do this update now as its pretty slow getting all the eligibility scans in place for the trial protocol. It is only when I’m through this that they can confirm that I will be put on the trial.
For those of your following previous posts, the tiny maggot sized and coloured piece of me that was extracted with a punch biopsy a week or so ago turned out to be malignant. So that distinct shape, wasn’t scar tissue, fat necrosis or my paranoia, it was a mass of cancer cells that have grown from some microscopic cancer being left behind. This is why you always want clear margins, the bigger the better. Mine weren’t clear. Ever. So this is not a surprise.
I first felt the lump as a pin head (that’s when they thought I was a bit hyper vigilant or even paranoid) and now its the size of a sweetcorn kernel and is a adenocarcinoma (a cancer tumour made of glandular cells). They’ve sliced this little tiny maggot up into slithers like a cucumber into tiny rounds and put it on slides. They have tested it for hormone receptors. It has none. No targets for treatment. So as well as being a grade 3 tumour, it has 2 out of the 3 markers it needs to be classed as ‘triple negative’. The HER2 status (the third marker) takes another week or so and I’m sure it will be negative again. So it is the same Triple Negative Breast Cancer. This cancer can sometimes mutate to be HER2 positive, so we have to go through this motion. Once my tumour has finished its little trip around the labs of the south west of the UK, it (or another piece from one of the other tumours) will be put in some formalin and flown to the US or Switzerland. Whilst my body is pretty much grounded, little chopped off bits of me are able to travel passport and insurance free.
Invasive breast cancer is tricky. It starts small and undetectable and then eventually the cells join up to cause a lump you can actually feel. A lot of breast cancers are ‘ductal carcinomas in situ’ or DCIS and never become invasive. These are more like a boiled egg still in its shell, easier to cut around and remove. Whereas invasive cancer is more like scrambled or powdered war time egg or a Jackson Pollock painting.
One of those little microscopic bits has grown into something that is still not traceable on a ultrasound. I even sharpie-ed up the spot beforehand. The sonographer felt it with her hand, but the scan didn’t show it. The PET-CT and CT scans didn’t show it either as there is so much other activity going on around this place from the surgery, scar tissue and radioactivity damage. My surgeon said he always prefers physical examination for this kind of local reoccurrence.
‘Once again, the grope test wins over tech then, but I guess you can’t say that’.
My response to the surgeon.
Well, that got a little side tracked from talking about logos, but at least you are up to speed.
Tune into your intuition
If I could sign off with one thing it is this: don’t delay if you have symptoms or lumps you are not sure of. Don’t be paranoid, but get to know your body. You are so often the best judge of any changes or suspicious activity. Tune into your intuition.
I already have the mastectomy scars branding me a ‘breast cancer victim’. However, a little lump, like a logo could be a recognisable symbol of early cancer or re-occurrence. Its distinctive design, this time of cells, the malignant or benign deciding factor.
Either way, for me, it is always better to know and to act.
I can’t really dress that up in a fancy headline. Before this week ends I’m going to attempt to capture 48hrs in the life of a mTNBC patient fighting the system for treatment and their life. I wasn’t going to write this post at all. Firstly I’m in it up to my neck and it’s hard to get enough perspective or space to write coherently. Secondly the situation is shifting all the time. However I think if I don’t try and capture some of these recent events I won’t even believe it happened and I’m living it.
If you read this to the end I hope it helps you understand why sometimes people with cancer and serious disease just smile and say ‘I’m good thanks’.
On Tuesday this week the facts came at me:
– ‘We now have unequivocal evidence that your disease has progressed and is functionally active’. – ‘You are no longer on the trial’ – ‘We’ve applied to unblind you and you were on the placebo’ – ‘We don’t have any immediate options at this hospital’ – ‘We will refer you to another hospital who might have something for you, but we don’t know what’
Bang. Bang. Bang. Bang. Bang. The news kept coming.
Despite knowing in my heart that my disease had progressed, hearing it finally confirmed was brutal. Not a surprise, but a shock none the less. I felt like I was being ejected off my plastic hospital seat into the ether. Abandoned by the system and the lack of treatment for TNBC again. Left to come up with my own plan (or at least that’s what it felt like).
But this is what I do best. It’s my calling. I make stuff happen. I go around problems. I try to look ahead as much as I can, to scenario plan my next move. I often have a strategy. I breathed, I had one here too.
However, I was upset. Not angry, but mourning my future. Grieving the reality. Trying to accept the injustice and bad luck of not getting the drug I researched so heavily back in March. The trial that so many people helped me get on within 3 weeks of my secondary diagnosis. The hope ebbed away. I felt hollowed out. Not done, but desperate to catch a break in this relentless, once hopeful, now seemingly futile journey.
I looked around at the wonderful NHS hospital that has held me close for 6 months. I smiled at yet another person I knew by name, knew about her children, where she trained. I must know about 30 people by first name in this hospital. It felt intimidating back in March when I knew no-one and now I felt sad to leave the building and the people who has enveloped me for this part of the fight. I was sad. I was letting go in a way that I haven’t normally done when the bad news comes. The work on myself and even this blog meant I was feeling it deeply, not disassociating. This is good and bad.
I walked to the train with my husband, we were in a bit of a trance. Then a switch flicked. I literally got back on the train metaphorically and physically. I had to make a decision to detach again. To pretend this was work. A mammoth project to direct. A big problem to solve, move forward and take control of. People to mobilise and mindsets to shift. Starting with mine. I could not let this happen to me. I had to get back in the driving seat. Fast.
What did I know? Who did I Know? How long would it take my current hospital to send a referral letter? What were my options? Who else might have a perspective on those options?
I was manic, but straight away I remembered a kind and determined woman I had been exchanging posts with on an invaluable forum I belong to. She was on a clinical trial at the hospital they were talking about referring me to. If it was anything like the hospital I was leaving she would have a direct line number into the trials team. I private messaged her. She astounded me with her speed and quality of response. She is a kindred sprit. She sent a screen grab of names, direct lines, mobiles and emails within a minute or so. I was getting intermittent WiFi and reception. She messaged that she thought the trial might be closed. It sounded ambiguous though – ‘thought’. My mind was racing. While I was in a tunnel, on her own initiative, she called the trials team. Out the tunnel – another message. ‘There’s one place left, you’ll have to move fast’. I felt sick, but excited.
“There has got to be more relaxing ways to die.“
WhatsApp to my family
Whilst on the train, I used my mobile, genius-scan and dropbox to scan all the recent scans and letters I had. I copied the bold ‘diagnosis title’ at the top of the paper. I frantically tapped my recent medical history, NHS number etc. into my phone. The file I carry around and the data in my head was coming into its own. Not to mention the digital revolution. Once off the train I finished the scanning in the waiting room (If that isn’t a metaphor for how I feel I don’t know what is).
No one could say I’d missed an opportunity, by not acting fast enough. This is the exact opposite of an appropriate epitaph for me!
I spoke to the fab forum woman (you know who you are) on the phone. It was the first time I’d ever heard her voice aurally. We have never spoken or met face to face, yet I knew her and this week she did for me what I try to do for others. She got me back into action mode fast. Thank you.
I followed up my email to the hospital with a friendly call. They hadn’t seen my email yet, they’d just come out of a busy clinic, they hadn’t seen an email from my hospital either. I briefly explained the situation, mindful that she probably looks after many trials and patients. She was effable and kind, but sadly updated me: ‘That place has now gone’. ‘The trial is closed’. ‘Sorry’.
My heart fell inside again. I slumped on the worktop. I knew it was the only 2nd line trial (second lot of treatment for a secondary cancer) in Europe that I had a chance of being eligible for. The only way to get Atezolizumab. I’d used up my 1st line life on the previous trial and got the placebo. I felt sick and exhausted. I was still on the phone though, chatting about trial recruitment and safety reviews. The work part of me conversed with the hospital trial manager I’d never met to understand the process and the system. I asked her to keep my details and if possible start a wait list for a place in the unlikely event that someone pulled out or wasn’t eligible. A total long shot, but I want my husband and children to know I did everything in my power to be here for them for as long as possible.
I went for a swim. 20 lengths. A change of tempo and location. The water on my skin. I felt alive. I had reasons to be alive (to coin Matt Haig). I just had to find a way to keep alive.
Late afternoon the next day, I had a pre-scheduled appointment with my original surgeon at my local hospital. I had planned to discuss the surgery or radiotherapy options. Except these were no longer options. Off the table.
It was still worth seeing him though because I wanted to understand more about the lymph glands and the small lump I suspected was a reoccurrence. He and the breast care nurse were first class and continued the action mode. I ended up having a mammogram. I had to laugh when the radiographer said ‘Are we just doing the left side?’. She had looked up at my naked torso before I had a chance to answer, so my response was redundant.
The purpose of the mammogram was to rule out any spread of disease in the left breast. I’ve been banging on about having both boobs off since the day I was diagnosed so it was mildly disappointing that the mammogram was clear. Whilst my breast was mangled in the machine, I could see a persistent ‘no caller ID’ call coming up on my apple watch. I’m all for answering on the go, but this seemed extreme, even comical. It might be after school club as I’d just received a text from another parent, it could be my mum…or it could be a hospital. I wriggled free and tried to answer it. Missed it. I got dressed and waited to see the surgeon again. The phone rang again just before I was called back in for a core biopsy (undressing (3rd time) local anaesthetic, shot of adrenalin (like I needed it), scalpel, core punched, tweezers, stitches, dressing) on the right side (I kid you not).
It was 5.12pm on the Wednesday. A two minute call. There was a place on the trial. If I could read the c20 pages of consent form tonight, and be at the hospital for 9.15am the next day, it was mine. I was ecstatic. 18 months ago I could not have imagined using that adjective to describe entering my body into a lottery to get either my third lot of chemotherapy or two experimental drugs (one of which is Atezolizumab). If this was fiction it would seem far fetched, but this is my life and subject to eligibility scans next week, I’m going to be able to get some treatment. It still hasn’t really sunk in.
‘Welcome back to the arena! The fight ain’t over! Buckle up we’re off!’
My youngest sister’s message to the family WhatsApp
I was awake at 5am. I got up at 6am and travelled to the clinic. I met the new oncologist, signed the tome of consent paperwork and as of lunchtime we might have a treatment plan. Just a few more scans, blood tests, ECG’s and biopsies and we should be done. So that’s next week covered.
Telling the kids
We updated the kids this morning as they have antennae for a change of mood.
‘Mummy’s cancer lumps aren’t shrinking anymore and it turns out that I wasn’t getting the proper medicine, but the good news is we found another doctor and he’s going to try and give me a different medicine’.
That’s what you call the distilled version.
‘Why didn’t they give you the proper one the first time?’ As an adult it’s pretty hard to accept the way clinical trials work and when you say it in lay terms to a child it seems absurd. Especially when you are talking about how long their mummy will live. What’s worse for children is if I get the right drug it will probably make me tired and ill before it even starts to make a dent in a tumour.
Cancer and its treatment are impossible to explain to children, but we have to try, we can’t shut them out. Anyway, that’s a post for another time, I’m off to watch Fleabag at the National Theatre Live.
It is astonishing how quickly 3 weeks goes and here I am back in the purple chair. Despite the smile (and the Simon Le Bon roots), this time it is with some sadness as this was likely my last day on this trial.
Yesterday was a day of mixed results. The bone scans and MRI’s were good, normal wear and tear (felt like scraping through my bone MOT), but all clear from any potential tumours. Sigmoidoscopy all good too – so just a free enema and a bit more dignity lost. Sadly though the ultrasound confirmed what my instincts and prodding had suspected. This increase in secondary tumour size plus the lump on my mascetomy scar will almost certainly count as disease progression.
There are 3 main reasons you come of a trial 1) disease progression 2) unacceptability toxicity 3) patient says ‘enough’. When they told me back in my consenting appointment I said ‘or number 4 you cark it’. My lovely oncologist, who was not entirely used to my directness or sense of humour (then) rather dryly said – ‘that’s included in number 1’.
So the next couple of weeks are going to be a bit hairy. I will need more scans (PET-CT & CT). Oh goodie! They will then have a big old chat about what to do next. The decision tree looks something like this scrappy sketch I did (yes Mum, I know the hand writing is horrendous, but as I keep telling you I have other qualities):
So this is why today was tinged with a bit of sadness. If the scans prove ‘too much’ disease progression we will apply to be unblinded from the trial. If I am getting the immuno drug and the disease has still progressed then I guess it is back to chemo only. Although I’m hoping I will be able to have surgery and/or radiotherapy to my contralateral (‘other’ to you and me) side as there is something more physical and real about these treatments even if the cells are hiding from the scanners elsewhere.
If I am getting a bag of water every three weeks, I hope to still be able to try immunotherapy via another trial. I can feel the all nighters on clinical trial databases coming on again (see Magpie scientist) and visits to other hospitals.
Whilst all this is going on I plan to distract myself with some creative projects, a VAT Return (that will be factual), some consulting work and a good house sort out. I will also continue to catch up on all the half written posts and poems I have lurking in books from the early days of the last 16 months. Expect some flashbacks to those days whilst I wrestle mentally and physically with what the next couple of weeks mean.
Ever since being diagnosed with triple negative breast cancer my friends and family have said I should write a blog or a journal. Trouble is I didn’t feel like writing. Updating everyone, answering and writing texts and WhatsApps was writing enough. Especially on the first lots of chemo that made my eyes go blurry and meant I had to wear dark glasses (even inside). Turns out one of the chemotherapy drugs I had in my first 18 weeks of treatment (Cyclophosphamide) is derived from mustard gas, so I guess that’s why.
I’m back on chemo again, but its more manageable this time. Throughout this experience I’ve been scribbling down odd thoughts in notebooks, scraps of paper and WhatsApps. The wonderful and growing number of people who are supporting me and my family are keen to hear how I am doing, so with some encouragement and an experimental attitude I thought I’d give this blogging lark a go.
I hope it makes you stop for a minute and embrace your life right now. I’d love you to have real conversations with the people who matter about the stuff that matters to them and you. Maybe you’ll look at the wonder of the natural world or be compelled to do what you’ve always wanted to do.
Maybe it won’t be for you, that’s fine too. If you don’t enjoy reading a piece move on to another or come back another day, don’t endure it. If you do get something from it I’d love your feedback. Feel free to follow and share the the blog and/or my twitter and instagram pages.
Click on the links for more information about why ‘The Cancer Gap”? or how I started writing poetry or my poems. Alternatively, just scroll down to the beginning of the blog or look in the menu on the top left of the screen. Have a nosey around, you’ll work it out.